For people with dementia, a free-form game to celebrate the moment
For people with dementia, social interactions can be vital in slowing the disease’s progression.
But as a person’s condition worsens, finding enjoyable things to do together can be difficult.
Vermonters Emily Rinkema of Westford and Deb Emerson of Burlington have experienced that with loved ones firsthand.
The two longtime friends hope a new card game they’ve created may help.
It’s called "(ho-dee-ay)," which they explain is the phonetic spelling of the Latin word for “this day.”
“We really wanted a name that captured the idea of living in the moment and finding joy in the moment, which is really the mission of (ho-dee-ay),” Rinkema said.
“We also put the name in parentheses,” she added, “because we liked the idea of being able to engage in the parentheses between the past and future. When people are living with dementia, their caregivers are often living in the past and grieving the past. Or they’re fearing the future. Too often we forget to stop and sit in the moment.”
Deb Emerson said her father-in-law had Alzheimer's disease.
“And once he was no longer able to leave the facility he was in, you know, we really struggled to find something to do with him that was meaningful and engaging," she said.
One of the things that worked best were family photo albums.
“He didn't remember who he was looking at or any of the stories of the photos,” Emerson said. “But he would just stare at them, and we would talk about what he was seeing, and it was like, just these amazing bright moments.”
The bright moments that Emily Rinkema remembers sharing with her father often involved playing cards. Gin Rummy was their favorite until his Parkinson’s disease worsened.
“And as he progressed through dementia, cards became more and more challenging," Rinkema said. "And a big part of that was the rules.”
She and Emerson began talking about ways to make a card game without rules, using photographs. A game that would be flexible and enjoyable whether you had dementia or not. A game whose sole purpose was to help people connect.
It took several prototypes, but they eventually came up with a square-shaped deck of cards that included 23 pairs. Each has a beautiful photograph of a bird. There are hawks and ospreys, as well as songbirds and sparrows.
Essex resident Peter Riley is a musician and wildlife photographer who supplied the images.
“Some are in flight, some are perched, some are singing," Riley said. "And they’re very colorful.”
He said it’s been a thrill to see his photographs used for something like this.
(ho-dee-ay) is not the first game targeted to people with dementia or memory problems. But it may be one of the most free-form.
Rinkema and Emerson say they designed the cards to be easy to handle and feel good to the touch. The rest, they say, is up to the user.
Invent your own game or sort the images into pairs or by color. Or just talk about which of the birds you’ve seen or not seen before. The goal is connecting, which experts say is key.
Dr. John Steele Taylor is a neurologist at UVM Medical Center, and says being socially isolated is “one of the worst things possible for the brain.”
Strategy games can help stimulate the brain, which is helpful with dementia. Taylor says data shows connecting with others is even better.
“Social interactions, especially if they have a leisurely component, or a physical activity component, that’s ultimately the best way to exercise the brain," Taylor said.
Renee Reiner is co-owner of Phoenix Books. She says both her father and grandfather died of Alzheimer's disease, and she was excited to be among the first retailers to sell (ho-dee-ay) cards.
She says she brought the game to a dear friend with dementia, a woman who used to sing with Reiner in Noyana, a Burlington-based hospice choir.
“And so we’re walking through the deck, my girlfriend and I, and we come upon a red-winged blackbird,” Reiner said. “And she looks at the bird, and she looks me in the eye and says ‘Blackbird! There’s a song!’ And I said, ‘Yes, there is a song.’ Because Noyana sings 'Blackbird,' by the Beatles. And I sang it to her, and she hummed along for a while, and it was just a charming, endearing moment.”
"I think it was exactly the sort of thing those cards were meant for," she added.
A box of (ho-dee-ay) cards cost $25 online. Emily Rinkema and Deb Emerson say sales and feedback have been strong enough that a second set with photos of classic cars is currently in production.
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